The Rare Life

When Levi was only two years old, a brain tumor was discovered. His parents brought him into the hospital for testing after he was inexplicably sick for several weeks. In this episode, mom Kara shares what it was like to get that life-shattering news and to send her toddler off into intensive surgery to remove the mass. Although the surgery was life-saving, it had its own major repercussions for L...

It’s hard to put a finger on what has been the hardest part of Kimball’s medical journey. Watching him suffer will likely remain number one on that list forever. But a close second is the isolation. Having a child with disabilities is so very isolating. With his arrival, it became difficult to relate with my family and friends. We were suddenly worlds apart. And I know I’m not the only one! I’ve h...

Katherine never knew a world without her big brother Jonathon. Their relationship has a lot in common with any other run-of-the-mill siblings—they have inside jokes, a whole lot of love, and a bit of resentment. So, why are we talking about Katherine’s experience growing up? Because Jonathon has rare syndrome that hugely affected their home life and every day. In this episode, Katherine shares wha...

Have you ever felt inadequate to mother your child because of their diagnosis? In this episode, Katherine shares what it was like to find out her daughter Anna had achondroplasia—the most common form of dwarfism—during a 32-week ultrasound. As she researched the condition and faced the stigma she would help her daughter navigate throughout her life, she felt Anna would be better off adopted by adu...

In celebration of the first birthday of The Rare Life podcast, I share some behind-the-scenes in the creation of the show. I explain what it’s like to run the podcast while also being a stay-at-home mom still very much in the trenches of rare parenting. Per usual, I stay real and include both the amazing and not-so-amazing aspects of it all.  I also talk about the purpose of the podcast, what...

Does your medically-complex child have a sibling? Are you contemplating adding one to the picture? In this episode, Katie Taylor, the child life specialist behind the popular podcast Child Life on Call, answers listener-questions. We talk about educating them about their sibling’s medical needs, helping them cope with the difficult and complex emotions that often arise, and how to know if/when it’...

The parenting experience with a child with medical complexities can feel worlds away from those around us. There are so many aspects that no one knows or sees. In this episode, Anna Brown comes back to share three of her infamous “Confessions of a special-needs mama” that she has a reputation for on Instagram. We unpack three of her—and her followers’—favorites: 1. I am not stronger than you. 2. W...

Four-year-old Emery has a slew of diagnoses under the umbrella diagnosis of Rubinstein-Taybi syndrome; Almost every one of her systems are impacted and require specialists and therapies. When she was born, Anna and her husband Justen were put under enormous strain—none of their family or friends could give them any guidance or insight into how to parent a medically-complex child. They were faced w...

Finding out Kimball was hard of hearing was one of the hardest diagnoses to receive. It was totally unexpected, and we grieved the lifelong implications of it. In this episode, I share our journey with Kimball and his hearing loss, the controversial world we were thrown into, and the importance of following your child’s lead in determining what language(s) to give them. I also open up about the tr...

Emotional safety is the security that I can share what is in my heart with my partner. Every relationship needs that, but perhaps none more than in the relationship of special needs parents. So much is asked of us, and there is often grief to work through. Being able to feel safe in sharing the deepest, darkest places of our hearts is critical. In our conversation, Dr. Matt Townsend teaches us abo...

When it comes to kids with disabilities, friendships can be a bit more complicated thing to navigate than with the average child. Effie is back from her story episode to talk about the ins and outs of her son Ford’s relationship with the world. She shares some truly heartwarming stories of inclusion and the surprising effects of putting LED lights on the wheels of his wheelchair. We also dive into...

Effie knew something was “off” with Ford from the day he was born, four years ago. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed. In this episode, Effie shares this experience of receiving Ford’s diagnosis. We also chat abo...

It felt like Wendy and I were drowning right beside each other in the same stormy water, and I couldn’t save her. Wendy has struggled right along with me since Kimball’s arrival in our family, and it’s something that has improved with time. In this episode, I share all about that as well as what Wendy has taught me along the way. I also tell stories of Wendy’s hysterical schemes with Kimball inclu...

Inclusion: What does it mean to you? If you’re in the same parenting corner I am, it probably means a whole lot. What would we give to create a more inclusive and loving world for our children? There are many ways of doing that, and one of the most effective ways is in children’s literature. So many foundations for our lives were laid as little children peering at books read to us by our parents....

Social media can benefit many kinds of people, but perhaps none so much as special needs parents. So many of us have feelings of isolation from friends and family as we are thrown into a world they don’t understand. Enter other parents who get it. Social media can connect us with other parents navigating similar medical and other needs. We can feel seen and heard and get ideas on how to make our l...

Not every twin has a living sibling—and Lily is an example of this tragic phenomenon. Her sister known as Autumn passed away at 24-weeks gestation, and she was born a few days later. In this episode, mom Jess shares the pain of losing a child and of the struggles that Lily has had because of her premature birth. Lily has a tracheostomy, is G-tube fed, and has damaged lungs due to her intubation du...

In this special collaborative Rare Disease Day episode, twelve parents come together to share a little about their children with rare conditions. This is a tribute to all children with rare diseases everywhere, and their parents who love them more than life. These twelve moms tell us a bit about their child’s diagnosis, what it was like to find out about it, and what they want the world to know ab...

Season 3 is upon us! I am so excited to share with you the amazing guests and topics we have coming your way! This season’s theme is all about how our relationships have been affected by our children—with our partners, with extended family, with our other children, with friends, with the world at large. In this episode, I share a bit about the first four episodes of season 3 (including a special c...

Another amazing season has come and gone! In this episode, we celebrate relatable episodes, listen to the takeaways and thoughts of three parent-listeners, and I share my number one goal for the upcoming year. My heart is brimming with gratitude for Season 2 and all the stellar guests I had the honor of interviewing and sharing with you. We’ll be back February 18th to kick off Season 3! We will di...

The rollercoaster of emotions that comes along with having a medically complex child is an inherent part of the “job”. Orley Bills, the Harley-loving social worker in the Rainbow Kids Pediatric Palliative Care team, spends his days supporting said parents while their children are hospitalized at Primary Children’s Hospital. Sometimes he does this by utilizing his training as a certified grief coun...

You matter. You deserve self-care. What’s your self-care like right now? Do you make conscience decisions about filling yourself with fulfillment and peace, or are you numbing out in front of the TV before collapsing into bed? Regardless of your current self-care practices (or lack thereof), this episode is for you. Especially as parents of children with extra needs, we merit extra care. In this e...

17-year-old Ryan can eat and eat and never feel full—but more than your average teenage boy. He has Prader-Willi syndrome, a rare genetic disorder that prevents satiety, the sensation of fullness after eating. His parents keep their kitchen pantry locked up to prevent him from consuming dangerous amounts of food in search for the satisfaction that will never come. As his mom Jessica Patay relates...

Our fierce love for our children is our superpower—it’s what makes us just what they need! But love can also be a double-edged sword of joy and agony. Listen to this episode to find out how my son’s neurosurgeon reacted when I showed him a homemade cervical collar—a medical device to protect his spine from compression, an extremely dangerous complication. Love can push us out of our comfort zone a...

Becoming aware of our thoughts and emotions is the first step in developing a resilient mindset. For life-coach and author Claudia Taboada, walking her dog each day was the first step in this life-changing awareness. She was able to process her stressors related to her special-needs son and create solutions to alleviate them. In this episode, Claudia shares her top techniques in creating and nurtu...

When Lillian died four years ago, Anna’s heart was ripped out. When her son Gilbert was born with severe birth defects three years after, her grief evolved and has in many ways intensified. In this episode, Anna shares Lillian’s story of being stillborn at 35-weeks, and how that has interacted with her grief over Ghillie’s brain injuries and a second round of lost milestones with her child. She al...